The Search for Sexual Health
by Richard P. Keeling, MD
Richard Keeling, MD, is director of University Health Services and professor of medicine at the University of Wisconsin-Madison. This article is based on his keynote address at ASHA's Canadian HELP Group Conference in June 1995.
Genital herpes means something. Meaning is shaped by attitudes, assumptions, and values, forces that create the environment within which people experience herpes. Meaning is both social and cultural and intensely personal; it evokes an understanding not only of what has happened, but why it did.
Even referring to genital herpes as a disease invokes meaning: Disease means disorder, abnormality, imperfection. There is, of course, an enormous framework of meaning around sexual transmission in a culture as fascinated and frightened of sexuality as ours, and as determinedly judgmental about relationships. All of these elements of meaning, and more, create the context of our caring for people with genital herpes. We cannot work to manage herpes out of context; it is a problem in meaning and health, not just a diagnosis.
This "big picture" view of genital herpes challenges us to think about our services, and their meaning, differently. In doing so, we might explore answers to several basic questions: First, whose body is it, anyway? Second, what is health about, and who defines it? Third, what difference does it make that an infection was sexually transmitted? And fourth, is a disease what I have, or who I am?
The experience of genital herpes, in context, might feel like what Emily Dickinson described as the "bandaged moments" of the soul. Dickinson, the reclusive poet of Amherst, Massachusetts, lived a life as rich and colorful in its spiritual detail-and as desperately sensitive to meaning and context-as it was unremarkable in its demographics and quiet in its conduct. I don't cite her terse, dense poetry because it was written about genital herpes, but because it was written about the human experience, and about coping and managing in loneliness, isolation, and adversity.
The Soul has Bandaged moments
When too appalled to stir
She feels some ghastly Fright come up
And stop to look at her
That genital herpes can be such a bandaged moment in the soul speaks of meaning, not microbiology. It feels disordered and imperfect, and we, in this society are supposed to be perfect, well adjusted, community-minded, concerned, rested, and thoughtful. We should live traditional lives in traditional families with traditional values, striving, improving, getting better, going west, making money, achieving.
This version of life as a kind of greeting card, colored in soft pastel sand graced with reassuring words, bears about as much resemblance to our real lives as Disney World, Epcot Center, Euro Disney, or Busch Gardens have to real countries. But people like theme parks: They seem somehow ideal.
Living in the Theme Park
Theme parks also feel terrifically orderly. They teach a kind of history that embodies the mythologies of memory and tradition, sifting out the turmoil of events to present an undisturbed reassurance that there were no ambiguities. In theme parks, war is always courage, never hell; our side was always right. Slavery becomes an historical oddity, not a moral problem. My grandmother would ha these places; generation of southern ladies referred to the civil war as the "recent unpleasantness" or war, what's the difference? The theme park makes no direct pretense of being a history book. But it is different from the temporary escape we make into movies, books, or the arts (in the musical "Chorus Line," a woman sings of going to the theater: "Everything was beautiful at the ballet," and somehow things away from the ballet became more manageable for having been there).
In the theme park, though, we may forget that Italian history is more than pasta and street festivals, or that Little Big Horn was not a glorious battle; the boundaries between what happened, and what we imagine as perfect, fade. There are no unhappy employees; covert underground removal systems take away the trash, and omnipresent risk management observers erase the uncertainties about whose fault any accident must have been.
There are no unhappy guests, and theme parks call us that-guests-precisely to remind us who is who, and whose theme park it is (theirs). In their perfect, manicured, unambiguous world notice the absence of poor guests, the homeless, people who are chronically ill, and "nontraditional" visitors-of anything, or anyone, imperfect.
We spend money and time on theme parks because we would like, in some ways, to live in so uncomplicated a way. It may seem absurd to object that the Epcot Center is too clean and orderly, though it probably is; it is more honest to learn about the Holocaust from the museums in Washington, Baltimore, or Los Angeles, for example, than from the pavilion about Germany in Orlando. There are few pastels on the battlefield at Gettysburg, where the Civil War feels heavier than any "recent unpleasantness," and far less certainty reassures a visitor to the real site of Little Big Horn.
The problem is that we have collaborated, as a culture, in making these theme parks more than just vacation getaways. We have moved them into neighborhoods, schools, and shopping malls; put them on our billboards and television screens, and imported them deeply into our souls, where the meaning of the park becomes meaning in our lives. Looking at the meaning in our context, we find that we all are young, attractive, and sexy. Mostly we are white, but tanned, and we smile a lot revealing our perfect teeth. Looking right means feeling good. We drink (but have no drinking problems) and stay out all night (but look good the next morning); we find perfect moments for symphonic sex, and glow afterwards. We don't need to talk to each other before, during, after, or instead of sex; we find innumerable orgasmic moments. In this little theme park of meaning in our lives, all the dirty stuff disappears.
So people who get sick somehow fade away from our attention; diseases are unpleasant. People who don't succeed get forgotten (and blamed); if you don't go west, you don't go anywhere. If you weigh more than the cultural beauty-norm, you buy your clothes in a separate section of the store.
Muriel Rukeyser, the poet, wrote of the violence we do to ourselves and each other through this persistent struggle with judgment and meaning; after "they" hold the gun to your head long enough, she writes, "you start to hold the gun yourself". We start to believe it-moving the theme park not just into the shopping mall and the television, but into the back yard, and into the beliefs of our souls.
This, I think, is why my friend R., who has metastatic breast cancer, suffers so quietly that no one knows she is there; so thoroughly did no one know that her tumor almost bisected her spinal cord before she got help. Emily Dickinson knew of this condition of suffering; she wrote:
A great Hope fell
You heard no noise
The Ruin was within
Oh cunning wreck that told no tale
And let no Witness in
This same silence drives us to extend life needlessly and expensively in intensive care units; dying is messy, ambiguous, imperfect, but machines are easy and functional. Not only do we seem to think it is possible to be young and alive forever-as in the theme park-we behave as though it is immoral not to be. A heart attack is a failure, a comment on diet and lifestyle; HIV, as Susan Sontag wrote in Illness as Metaphor, focuses society's judgment and sense of retribution. In a way, being ill proves you were ill, and are; so insurance companies seek now to reimburse less of the cost of "behavioral" illnesses. If being sick shows you are sick, the disease is who you are, not what you have; my friend R. did not want to have cancer because she did not want to be cancer.
We don't want to be old, so we pretend not to get old; we don't want to be herpes, so we pretend not to have it, or have to deal with it. About all of this, though, Mark Twain had a sober reminder: "No one," he wrote, "gets out of this world alive." There is, in fact, an exit from the theme park, and it will not be performed in pastel. Looking at the proliferation of spandex, health clubs, and no-fat muffins, we might feel amazed, as Emily Dickinson was:
"Because I could not stop for Death-He kindly stopped for me-"
Sex and the Wet Spot
In our forgetting of reality-our wish that the context was what is we have, in fact, moved sex into the same theme park. The problem of dealing with sexually transmitted diseases, like genital herpes, is a subset of our larger problem of coping with disease in general (or with death, or history, or war). In our marketing images and television programs, sex is just enhanced pleasure, the predictable encounter of buffed bodies without the obnoxious intervention of communication, intimacy, or conversation.
On the silver screen, characters do not negotiate about safer sex, inquire about past partners, or insist on condoms. Sexually transmitted diseases disappear-except in the soap opera where the tearful disclosure that one of the otherwise absolutely beautiful, every-hair-in-place, pumped-pectorals partners has herpes is followed by ominous organ tones and a bathroom cleanser commercial. On television, a college student told me once, "nobody sleeps in the wet spot," which is, perhaps, the sexual equivalent of the recent unpleasantness.
This, then, is our context-the environment of meaning within which we meet, have sex, marry, divorce, look in the mirror, raise children, work, have homes or become destitute, get sick, and abuse drugs or alcohol. In this context we evaluate ourselves and each other, measure our lives, and assess our relationships. It is by our degree of difference from these norms, values, and expressions of meaning that we define our personal worth, and the importance of our variations and imperfections. The degree of that separation-from advertisements and magazines, theme parks and perfection-seems enormous for people with sexually transmitted disease. Hence, in Dickinson's words, the "bandaged moments" of the soul.
This separation can feel like ugliness, alienation, and incompleteness. In our mental theme parks, people with sexually transmitted disease appear non-pastel-we know who they are, and where they are, and we see them in primary colors (urban colors, poor colors, gay colors, people-of-color colors). We say in our pamphlets that "even nice people get sexually transmitted diseases" precisely because that is not what we think usually happens.
The sexually transmitted disease becomes a particularly unforgiving definition of self: herpes sufferer, AIDS victim. In naming them, we pass judgment, pointing out all the things someone should not have done. The STD affirms that there was a wet spot, a moment apart from the theme park.
You might notice, of course, the absence of reference to the means of transmission of other common infections (we say we caught a cold, not a "respiratory droplet spread infection"). Only in the case of STD do we connect the outcome to the mechanism, assigning blame and noticing the wet spot, or recent unpleasantness, which therefore come to define disease and person. We imply social imperfection in calling them "social diseases," and the net experience of the person with genital herpes is to feel not just different, but less-unhealthy, impaired, smaller, separate, marginal, more colorful, less sexy. And our dualistic view of health means that once one is unhealthy, one is fallen, unhealthy.
Is it, then, hard to understand the problem people with genital herpes have with self-disclosure? To say "I have genital herpes" seems to be saying, "I am unhealthy, defective, less; I had sex, and there were germs and a wet spot, and I am now less attractive not on the billboard, no longer in the theme park." So disclosure to a partner is a much bigger problem than one of communications skills.
Just as we, as. guests in literal theme parks, accept the standards and rules of their place, we come to accept inhumane standards about health, attractiveness, and value, and then to put them into forceful operation in our own lives (Muriel Rukeyser would say we hold the gun to our own heads). Now unhealthy in a throwaway culture, we let them toss us out; we live our stories in their context.
This means that helping people with herpes manage sexual communication and relationships will be far more complex than just talking about condoms, and helping them construct stronger coping mechanisms will be more difficult than just teaching stress management or learning to breathe deeply. Dealing with herpes is closely connected to crazy standards and mixed messages in a confused culture that seems obsessed with unreal bodies, delayed aging, eternal youth, and movie star sexiness. And understanding the experience of herpes is impossible without a sense of what health is, and what it means, and who defines it, and what it means to have a disease.
There are three things I think we can do as workers and helpers aware of these environmental, or contextual, issues for people with genital herpes. First, we need to redefine, and, in the process, reclaim, health. Second, we must close the theme park-taking a new perspective on attractiveness, sexiness, and human value, and coming to own our own stories, our own bodies, our own health. Third, we must stop holding the gun to our own heads.
A New Definition of Health
In her marvelous book 9226 Kercheval, Nancy Milio, a community health nurse, suggests a radical and humane definition of health: "wholeness unfolding". Imagine health as a quality, not an outcome, not a dualism, not a thing, not binary, not yes/no, but a quality, developing. Imagine health as the net interaction of physical, emotional, relational, social, and spiritual forces.
Health conceived in these ways has little to do with the theme park, the gym, the health club, MTV, the antiaging face cream, or the billboard images. Health becomes process, then continuum. Doctors might tell you you have hypertension or not, or herpes or not, but they cannot tell you whether you are healthy or not: Health becomes a self-defined operational concept. Freud said that a person who could love and work is healthy; in the Christian monastic tradition, to be healthy was to pray and to work ("ore et labora")-perhaps they are the same thing. Health may be found in the ability to love, to work, to know yourself, and to be, in some way, centered-whether or not you have genital herpes.
A beloved friend of mine, Miguel, worked for the last two years of his short life on an AIDS prevention project for the American College Health Association. He had HIV himself; he developed Kaposi's sarcoma, a number of opportunistic infections, and severe neurologic complications that left him unable to walk. As he approached his death, Miguel became progressively more healthy: He laughed loud and often, loved his friends, did good work, reconnected with his family, enjoyed sunsets, and sang on roller coasters. His wholeness unfolded.
You could, then, imagine parallel statements of equally valid fact: I have AIDS, and I am growing healthier. I have genital herpes, and I am a healthy person. Health then is something far greater than a diagnosis, or a measurement of maximum heart rate or lab value; it is not determined by scales, calipers, and reagents. This is what it is that will make it easier for people with genital herpes to self-disclose-and for any of us to negotiate and care for ourselves and others Health moves beyond self-defense and secrets when it is possible to have it and also have genital herpes.
So: We must restore to ourselves, and take away from physicians (including me) the meaning that health has; we have to distinguish medical care from health care. But we must also accept that health does not mean we will not die-or even that we may not die soon-because health is about how you live and how you die, not about whether you do. So: Instead of pumping iron, build houses. Leave the stair climber machine and the stationary bicycle at the health club and go do something that matters. Help; love; work.
Closing the Theme Park
A second radical recommendation: Close the theme park. The theme park, remember, is a context of norms, values, attitudes, and expectations within which we have all learned to live our stories. We incorporate those values and assumptions as internalized voices that imprison us. To leave the park, we must acquire power over it to manage the context, instead of having it manage us. Managing any environment just requires noticing and evaluating it critically-recognizing the manipulations and lies of advertising, pointing out to our children the misrepresentations of media and marketing, voting with credit card and cash about what images we want to represent us, replacing virtual relationships with real ones.
No amount of hope and prayer will make you look like the model in the underwear ad-you can buy as many pair as you want, and your body will still be your body. Know that, and you manage your context. One of the greatest values of the herpes support groups provided by the Herpes Resource Center is exactly that in the groups real people tell their real stories, and, in sharing those stories, we come somehow to be able to know, and manage our own. To hear them, of course, we have to take the head-phones off; get those plugs out of your ears and listen. Virtual reality is always virtual, and never real.
Closing the theme park also means learning to affirm differences and build stronger, more inclusive communities. Everything we do to promote inclusiveness and diversity makes the world safer for people with genital herpes. Remember the theme park's homogeneity, pastel colors, and exclusive entrance practices (we all have to look this way, act that way, dress the other way). People with herpes cannot feel safe there; they are too colorful, even if that color is known only to them- selves. One prejudice confronted, one certainty challenged, one bigotry reduced-whatever makes our world less judgmental makes it safer to be, and know, and describe, ourselves. If it feels risky to be different, it will feel impossible to disclose that you have genital herpes.
Our third suggestion: Stop holding the gun to your head. It's not novel to talk about coping with herpes as a kind of recovery process; a more radical, but important, reality is that coping with genital herpes means recovering from a culture and its expectations, from the assumptions. and values that make us feel less, from the hourly violence done to our sense of self. Coping with herpes means consciously moving away from unreality: It requires, like all other recoveries, an end to denial, the support of friends, and some spiritual strength.
You might rightly complain that these strategies will make very little difference in the short term-that reframing health and changing value systems about self and relationships will not be done quickly, and that it will not make any difference tomorrow. You might also object to the absence of menu-driven solutions (10 concrete steps to take). But I hope to have convinced you that we cannot work with herpes out of context. We will deal better with herpes when we can deal better with sex, intimacy, difference, health, and disease. This is, in truth, not a despairing truth; it is a very hopeful one, and one far more likely to work than our usual simple-minded prescriptions for each other. And hope is always important. Emily Dickinson opened our eyes earlier; she opens our hearts now as she writes about hope:
"Hope" is the thing with feathers-
That perches in the soul-
And sings the tune without the words
And never stops-at all-
And sweetest-in the Gale-is heard-
And sore must be the storm-
That could abash the little Bird
That kept so many warm-
I've heard it in the chillest land-
And on the strangest Sea-
Yet, never, in Extremity,
It asked a crumb-of Me.
"Hope is the thing with feathers that perches in the soul." And hope for people with herpes will be found there, too-perching in the soul.
Emily Dickinson's poems are quoted from Thomas H. Johnson's Final Harvest- Emily Dickinson's Poems Boston Little Brown ~ Co.,1961